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Rosanna’s Story of Recovery and Reconnection

My name is Rosanna Shepherd. I developed MdDS on a 5-day cruise in October of 2010. While on the cruise, I experienced one episode of migraine with aura. It was about a week later that I realized I didn’t feel quite “right”. My balance was off and I started to feel anxiety and a foggy feeling in my head.

Thinking it was an inner ear problem, I visited my ENT and explained these strange symptoms. He asked me if I had been on a cruise lately and I confirmed that I was. He diagnosed me immediately. I also went to a neurologist for various brain scans and everything was, of course, normal.

I had been working in flooring sales for 20 years, but I no longer could get out of bed without feeling my world was collapsing around me. I was late for work often, couldn’t concentrate. The anxiety was starting to control me as I didn’t know what to expect from one day to the next. I sought the help of a psychiatrist who prescribed a low dose Clonazepam twice daily, increasing it soon after to three x daily. He also increased Zoloft which I was already taking for mild depression to the maximum dose. My company fired me three months into my illness. After 12 years with them, I was no longer a productive and dependable employee. Luckily, I have a supportive husband and family or I may have considered ending it all. There just seemed no hope as I was sure I would not go into remission.

Gradually, I began to accept the dramatic change in my life and realized I would never be the person I was before MdDS. The rocking motion, anxiety and overall feeling of despair began to subside. It was over a year before I ventured out to social gatherings and reconnected with my friends who patiently waited for me and prayed for my recovery.

There are still hurdles to jump every day but they are shorter and not as scary. My husband and I both acquired our tour guide licenses and have a fledgling tour company. I just want those of you who have been recently diagnosed, or are still struggling to get a diagnosis, to know that things DO get better and there is a light at the end of the tunnel.

Sincerely, Rosanna Shepherd 5-day cruise 2010 Age 63

Rosanna’s Story of Recovery and Reconnection was last modified: August 11th, 2017 by MdDS Foundation

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4 comments

April 2012 I took a two week cruise to Southern Carribean. It took 72 days to get diagnosis of MdDS. I thought I had lost my mind! Rocking finally ceased at 120 days point. We are an “at will” hire state. I was told that if i could not return to work after the 90 day short term disability my employer would consider it a voluntary termination of employment. I then applied and lost my claim for long term disabilty through my employer. I appealed, won. At one year point they said i could work and stopped my benefits. I am appealing the decision now. I am single task oriented now, social life much smaller, this is episodic illness and I have an episode almost every day with an undetermined time frame. The brain fog is better but not gone. I get what I call “drop outs” where when the episode starts i want to vomit violently but can’t, hard to walk, weak, achey starts in ankles then spreads through legs mostly, hard to walk and if bad enough hard to talk. My body is shutting down. No more treadmills, riding in car on winding roads or in the rain hard, listening to water fountains and rain makes me “drop out”, anxiety better but not gone, headaches better but not gone never had them before MdDS. No daning or fast foot movements, flat shoes are essential now. Uneven ground can no longer be tolerated or I “drop out”. Walking on snowy sidewalks that are uneven last winter – after 5 feet – too sick to talk! Hang in ladies, noone gets us but we have value and must persevere. Hang onto your nearest and dearest people, find what brings you peace, fight the fights you need to, stop explaining to those that don’t get it – they aren’t worth your precious time anymore. I wish you all peace and happiness – it’s sometimes just moments in a day, but cherish them. Be kind to your body when is breaking down. MdDS has to move out on it’s own time. Although slow, I live in eternal hope it will leave!

Margaret, I had to fight even to get unemployment. They also had documented all the dr. Appointments and missed time. They said I was no longer dependable after 12 years of never missing more than a handful of days.

Isn’t it strange how this syndrome elicits different responses from person to person! You had a severe migraine with aura, others I’ve spoken with have had near blindness due to the dizziness, some have terrible nausea, and I experienced a loss of consciousness going down a flight of concrete stairs and ended up on the sidewalk with a concussion and a subdural hemotoma! After a week in the hospital neuro intensive care unit, they sent me home with a great diagnosis of neuropathy! I’ve had this syndrome for six or eight years, on and off, mostly on, and do wish someone would come up with a definitive diagnosis! I have all the classic symptoms, but no conclusions as to the cause. I haven’t even had the pleasure of a cruise or flight or any other precipitating experience. And by the way – I am way over the age the chart shows. I’ll be 80 on my next birthday. …Margaret (Granny) Hodgen